Below are the 5 most recent journal entries recorded in jonkang's LiveJournal:

Tuesday, April 11th, 2006
4:47 pm	My Brother Jon Hi everybody. Before everybody who already knows what happens gets too freaked out, let me just tell you that this is Jack, Jon's brother. As most of you know, Jon passed away last Saturday, April 8, at about 7:25pm. Jon was so detailed in writing down his thoughts and updates about his medical conditions that my parents and I agreed that Jon would have wished for somebody to bring this journal to a close, and not leave out the last few updates. I actually managed to figure out / reset his LiveJournal password a couple of days ago, but I could not bear to actually write this article until today. Even then, I've spent the good part of the last two hours doing idle tasks to put off this duty of writing. (Actually I wrote half of this article Monday night, but could not continue and actually finished it today) My literary skill is nowhere near as good as Jonathan's, so you will have to excuse me. It was one in many skills in which he was better than me at, only he never knew it. I know that he looked up to me and never thought that he was as good as me in things, but I hope he has figured out now that he was much, much better than me in lots of the important things. I'll try to maintain as much of his style as I can, and provide the great details of the hospital and medical tools and Jon did so well. I think that Jon's final entry took us to last Saturday. He was taking the AVN-944 every day like a Swiss watch. Jon was so on top of things that he was completely aware of how to schedule his breakfast and dinners so that he could eat the medicine at the same times each day. He kept a chart of when he took the medication, and kept it neat and organized. Despite this, however, the drug was not having the desired effect: Jon's white count kept rising. I think that Jon has explained this before, but in a healthy person, a person's white blood count ranges from 8-13 thousand per mL or something like that. I am not sure exactly what the unit of measurement is, but 8-13 is the baseline value. During chemotherapy, Jon's counts would be at 0.1 for extended periods of time, making him very susceptible to infection. The week of Spring break, Jon's counts were in the mid 20s most of the week. Pretty high, but not high enough to really bother him. The battle between the leukemia and his body was going on. On a side note, I want to thank all of his friends who came during Spring break. Jon was very fortunate to have all of these friends, and he was soooo happy during that week. As luck would have it, his counts would really take off just as spring break ended. Thursday of spring break it grew to 42.4, and Friday it grew to 55.8. By Sunday, it had shot up to 78.5, with 86.5 on Monday, 97.5 on Tuesday. It was around Monday that Jon really began feeling tired, and some pain on his side. The pain was due to an enlarged spleen (the spleen tries to process all the white blood cells). It was causing him pain whenever he moved around. The doctors started Jon on a pill called hydroxysomething that was a form of chemo, to also help the AVN-944. While he was still at home the entire week, my mom did notice that Jon was a lot more tired, and didn't have his usual energy as often as he did before. He was probably still IMing like crazy though I bet. Thursday night Jon spent at home watching the Sharks game. His spleen was causing him a lot of pain, but it did not prevent him from cheering wildly as the Sharks beat the Kings by a score of 5-0. He was so excited to watch them play that for a couple of hours it didn't matter what his counts were, or how big his spleen was, or how close he was (37.8) to developing the dreaded 38 degree fever (which would mean he'd have to go to the hospital)--he was just a kid watching his favorite teams win and jump into a playoff spot. Friday morning, Jon had his regularly schedule trip to the ITA in the morning. He rode in a car with my parents, and along the way began to feel quite tired, and experiencing the typical effects of the low blood pressure / fever. It had happened again. When he got to the ITA, they tried to treat him there, but his condition quickly worsened and they decided they could not do enough for him there. They wanted to send him to the ICU, but there were no beds available at the time, so he had to go to the ER for the time being. At the ER, he was put into a pediatric room (again, lack of beds), and he was there for most of the morning/afternoon getting poked and prodded and tested. The pediatric rooms are just like the regular rooms, except the beds were a couple of inches too short for Jon. It was also much more decorated than the regular rooms, and there was even an Apple computer that the patient or patient's family could use to surf the web! A room opened up for Jon in the afternoon, and he was moved up to the E-2 Intensive Care Unit (ICU). Once there, he was kept on two different drugs to keep his blood pressure up. The blood pressure, like it always was, was the big concern. Jon also received a bag of platelets that I had donated earlier in the week, as well as all his standard antibiotic drugs. The doctors figured that this episode was caused by an infection, and not by the leukemia itself. However, the fact that his white blood counts were SO high made it that much more difficult for the limited resources in his body to fight off the infection. Things were not looking too good. I had actually been to the hospital earlier in the morning, as my scheduled platelet donation for Jonathan coincided with his unexpected trip to the ER and ICU. I talked to him a little bit in the morning, but I don't think he was completely aware of what I was saying at the time. I also spoke with the doctors regarding Jon. In the evening, after work, I arrived for the 8pm visiting slot. The nurse actually let me stay through the evening until my parents came and visited Jon as well at about 10. Jon asked me how the treatment was going and what the doctors had said. I told him that it appeared as if the AVN-944 was not having the desired effect. At the same time, it was not doing him any harm, so he could continue to take it until the doctors all met and discussed his next treatment options. I asked him how he would feel if he had to do chemo again, and for the first time I could sense some hope disappearing from his eyes as he answered in his typical "I dont know" fashion. As Friday night became Saturday morning, Jon improved. At about 5:30 am they were able to take him off of the blood pressure medication. For unknown reasons, Jon quickly got worse, developing a fever of 41 degrees (105.8), a very high heart rate of 180, and severe shortness of breath. Visiting hours are limited in the ICU, so the family was at home that night. (In the ICU, there is a single nurse that is there all the time with the patient). The nurse called the family at about 9:30 in the morning to tell us that we should go to the hospital asap. We all rushed there and arrived at about 10am. We probably arrived at the peak of Jon's condition, as he slowly got better after we arrived. His temperature began dropping very slowly, as did the heart rate. During this time, Jon was placed on an oxygen mask to help him breath. There were two things that morning that stood out to me. Jon was very tired the entire day, and would only spend a few minutes awake followed by longer moments of sleep. Everybody could tell he was very tired. Right after we arrived, Jon managed to wake up, and the first thing he asked me was "What time do the sharks play again?!?" I told him it would be Sunday at 5, against the Dallas Stars. I never thought that we wouldn't be able to watch that game together. The other thing that stood out was when he asked the nurse for his medication. Actually, asked is putting it too nicely. He quickly awoke out of his nap, and excitedly questioned the nurse as to where his medicine was. "Where's my medicine? I need to take my medicine now!" Like I said before, he was on top of his schedule like nobody else. The nurse assured him that one of the other nurses was bringing the pill soon, and he calmed back down. His pills are usually kept in the refrigerator, so they're somewhat cold when he takes them. This time, however, the nurse had taken the pills out before she started filling out all these forms for the medicine, so that 20 minutes had probably passed before Jon actually took it. When he did, the first thing he said was "HEY! THIS IS SUPPOSED TO BE COLD!" Jon was a fighter to the end...oh how much he wished to live and fight and defeat this illness. Jon had not eaten anything for over two days now when he asked mom to get him an ice cream sandwich. I was surprised when he was able to finish eating it all. It was one of those Nestle kinds that come in the yellow packaging, with two cookies and vanilla ice cream in the middle. He was so cute when he was eating it--I had to place a napkin on his chest to catch the pieces that fell down. By the afternoon Jon's temperature and heart rate had returned back to normal. The only concern was his breathing--it was very labored. He would often grab at his oxygen mask to hold it tighter in an effort to get more oxygen. The nurses compared it to running up a large hill. Your body is tired and is trying to get more oxygen. You could see the struggle in his chest with each breath that he took. The family and Jon had decided earlier that he did not with for a breathing tube to be put down his throat. The reason for the tube is to help people breathe artificially. Typically, a tube is put down the throat to buy the doctors more time. In some cases, the person recovers well enough to be able to breath again without the tube. In other cases, the person does not, and the family has to make a very hard to decision as to when to remove the tube. Either way, while the tube is in, the patient cannot speak, and often times cannot communicate to the family either. The doctors had told us the decision was up to us, but that they were not going to have a treatment option for the underlying condition of the leukemia, so it would only prolong his suffering, in addition to the grief that would accompany any decision to take the tube out. Saturday afternoon, Jon would have received the breathing tube had we not decided as a family to not put it in. His breathing deteriorated and he began coughing up some blood. At first it was just a slight cough and some blood, but it got worse as it went on. His lack of platelets probably contributed greatly to his body's inability to stop the bleeding. As fate would have it, some of Jonathan's favorite nurses from F ground had come to visit him. Two of them arrived earlier throughout the day, but 5 others showed up immediately after their shift had ended at 7pm. All of his old nurses, mom, dad, and I were with him every step of the way. He kept coughing, and in between his hyperventilated breaths, he asked "why can't I calm down!?" The nurses gave him morphine and another medication to try to relax him. His breathing slowed down as the family continued to hold him and tell him how much we loved him, how proud we were of him, and how it was okay if he wanted to go. He could no longer talk, but was able to nod and respond to what we were saying. Surrounded by love, his family, and his favorite nurses, Jon passed away at 7:30pm, April 8, 2006. Memorial Services will be held on April 17, 2006, at the Alameda Funeral Home (12341 S. Saratoga-Sunnyvale Rd, Saratoga CA) at 10AM. Visitation will be held on Sunday the 16th, from 1pm to 5pm. Jon, I love you, and I miss you, and I'll keep you in my thoughts forever. (32 Comments |Comment on this)
Wednesday, March 29th, 2006
3:09 pm	War of Attrition So this freaking leukemia just won't give me a break. Friday morning I woke up bright and early after a real good night's sleep and everything seemed like it would go well. Since AVN-944 must be taken on an empty stomach, I didn't eat breakfast at home and we brought my breakfast with us. My parents both took me to the General Clinical Research Center or GCRC or what I will now refer to as the LABORATORY or lab with my dad driving and my mom riding in the back seat. It was a really nice day and there was even a rainbow on the west side of 85. When we arrived at the front fountain entrance of the hospital, I took a moment to take a picture of the front entrance of the hospital because I had never done that before and today was such a momentous day. To my annoyance, as I did this, some lady who probably worked for the hospital said "you can't take pictures of the hospital." This really pissed me off and I really wanted to tell her off and even give her the finger but I didn't and just shook my head and continued onward into the hospital. What annoyed me the most about it was the past few days I had just read pages of legal nonsense already for the clinical trial that I had to read before I signed the consent form. I thought to myself, "jeez, lady, I've heard enough legal nonsense the past few days to last me a lifetime, I don't want to hear your stupid comment. I'm not going to hurt anyone by taking a picture of the front entrance of the hospital at 7:50 in the morning when there is almost no one around and there's no confidential information I am recording." So after taking the picture I hid my camera under my jacket and continued towards the lab. I took another picture of the lab's sign that says General Clinical Research Center, this time without anyone's objection, and signed in with the nice lady at the reception desk. They took my vital signs, asked me what medications I was currently taking, took my height and weight, and then took me into the room with a bed where I would spend most of the day, and then some which I didn't know yet. I took the magic pill at 8:20 and they did a lot of blood draws right before I took it. And then another blood draw at 8:35. And again at 8:50. And 9:20. And 9:50. And 10:20. Then I took a nap. But then when they took the next one at 12:20, I awoke feeling extremely tired, and a little warm. Turned out I had gotten a fever. Son of a bitch. So then came the regular drill and barrage of blood cultures being drawn, lots of fluids being given to me very quickly, and the doctor's going "hm, what's going on?" I slept under a thin blanket and a lot of ice packs everywhere. I also got some Tylenol. I sweated a lot and so my mom kept wiping me down with towels. At around 5 pm the fever had abated and I was transferred to F Ground for overnight observation. It was a relatively quiet night but they gave me some red blood cells and also my brother's platelets that he had donated on Tuesday. Saturday morning, I looked and felt really good so the doctors let me go home that afternoon. My mom's older sister's son-in-law who lives in Taiwan but is training to become a pilot in LA drove all the way up at 9 am and came by right after I came home in the afternoon at 3 30 or so to visit us all for the weekend. He would be very busy soon and this is a rare time for him to be in America so he made the trek, knowing he would have the long drive back as well on Sunday. Silly Dennis Huang and Felix Wu those crazy mofos had already gotten to my house about 5 minutes before I came home. Dennis was supposed to call before but he did not. After I had settled down, it was just in time for the tip off of the UCLA game which we all watched with much excitement. During the latter part of the second half, Jing dropped by for a quick sec to say goodbye before she left back for Seattle and we finally got to take a picture together. After dinner Samantha, Connie, and Gloria came by too and we played cards. It was Gloria's last day of spring break and it was so good to see her. Gloria had to leave at 8:30 for her flight back to Johns Hopkins and a lot of other people also left around that time too. So after that Shomik, Mike, and Tommy came as well and we played some Gin Rummy. Then at 11 everyone had to go because I had to go to sleep but to my surprise out of the blue, Josh Wang and Eric Shyu show up without a call after their drive up from Irvine and Santa Barbara. We said a quick hi and good bye and took a picture together before everyone left. That night I slept quite well. Sunday until today have been relatively quiet days with quick quiet days in the clinic and people coming to visit. Notable highlights include: Monday morning I went to go shopping at EBgames to trade in some stuff and get stuff for Four Swords, which ended up being a new GBA SP and 3 GBA to NCG cables. I ended up going to Gamestop as well because EB didn’t have the GBA to NCG cables. (If you’re confused, just know that I went shopping for the first time in a long time because it was Monday morning, a weekday, and there would be no people in the store.) In conclusion, it is too early to say whether or not the AVN-944 is working or not but so far so good, I have been feeling great since going home Saturday afternoon. Pictures. (8 Comments |Comment on this)
Thursday, March 23rd, 2006
8:53 am	"So the way I see it today, there's two possibilities... Number one: today, you will not leave the hospital and you will stay here. Number two: today, you will leave the hospital and won't have to stay here." -My Dad yesterday. So I guess that God, or Jack Bauer, or whatever or whoever the greater powers that be really like to give me 24 style twists that happen within minutes and stack the odds against Jack Bauer, or in this case me, where everything is working against him and make things really, really exciting before the climax where Jack Bauer against all the odds with the most extreme test of testicular fortitude and in the end finally prevails in an exciting manner. The short version of the story is that Tuesday morning, on the way to a routine clinic appointment, I got a fever and almost went blind and ended up in the D2 unit which is almost the ICU but not quite but I got home Wednesday afternoon. And as far as things stand now, we are green light for the clinical trial starting Friday. The long version of the story starts where my last post left off. So after watching 24, Ronald and I were just chatting and surfing the net in the living room and then I wanted to tell him about how crazy Mario DDR is so I looked it up on EBay and Amazon. Not to my surprise, on Amazon.com, it was still going for 180 dollars or so. But to my surprise, there was one auction that was ending in an hour and a half with a good seller with 117 auctions and 97% positive rating. So I used Ronald's EBay account and began to bid. I eventually won it for $91, plus shipping and shipping insurance and tax the total was about $115.28 which I felt was a really good deal. After all that excitement of bidding, I went to sleep around 12:30 after taking a shower and settling down. Tuesday morning started really normal and routine. I woke up fairly early again and did random stuff. I was kind of in a rush however and we were running late when we finally got into the car and left the house around 8:30. I started to feel really tired so I took a nap in the car. Everything was going fine until we reached Alpine Rd. which is about 5 minutes away from the clinic's curbside. At this point my stomach started to feel upset and I told my mom. Then soon a few minutes later, about a block or two away from the entrance of the entrance of the ITA clinic where the valet parking is, my vision started to become blurred like when I first went into the ICU. I told my mom to get a wheel chair to take me upstairs to ITA. But when we reached the curbside, my vision was almost completely gone. It was all red except for the corners. A bunch of random people came and then started to talk to me. Then a nurse from somewhere came and talked to me. She asked me what my name was and then put the chair down and my feet up onto the dashboard. She asked me to squeeze her hand which I was able to do. After reclining I started to feel better immediately and my vision began to return. They called 911 and I heard the fire truck coming, which is kind of funny because they were only like 500 yards away maybe and they still drove the truck over with the sirens blazing. Dr. Coutre himself (he is kind of like House, he is hella hard to get in touch with and answers questions quickly and simply), the one who is in charge of the clinical trial I am going to do, came down from the ITA after hearing I was down there and blind. After talking with him, he decided to send me to the ITA, not the ER. So the fireman who came all this way with all this hullabaloo just helped me move 5 yards from the car onto the wheel chair on the curb. After they did that they left. Dr. Coutre wheeled me in upstairs himself. Once in the ITA bed, they gave me fluids and drew blood cultures and all that jazz. My blood pressure was normal but I was developing a fever which concerned them. They also thought I might have an infection because of the upset stomach. I felt really good right away just really tired so I slept a lot. They decided to send me to D2, the cardio unit which is almost the ICU but not quite because they could monitor my heart rate as well as my oxygen saturation. I arrived into D2 at around 11:20 in the morning. The fever went away and then the rest of the day was spent mostly getting a blood transfusion and then a platelet transfusion. I slept through most of it, partly because I was very tired and also because they give me Benadryl before blood or platelet transfusions because otherwise I get crazy hives. After the transfusions, I woke up feeling really refreshed and good and took a shower. After the shower, my PICC line started acting up and they had to fiddle with it for a while and eventually put the blood clot thinning drug into the line to clear it up. I ended up going to sleep at 1 AM. Wednesday morning I awake refreshed and hopeful that I would be going home soon. After the Doctors saw me and talked to me, they agreed and I was to be discharged that afternoon. A funny thing was that we spent most of this day waiting. Dr. Coutre was supposed to come see me himself and that was what we were told in the morning. So by around 12, we were still waiting. My Dad's friends also called and said they were at Stanford and would like to come visit me around lunch time. One of them volunteers at Stanford which is why they were there. I made a joke to my mom that I wonder which one will come first, the visitors, the lunch from the kitchen, Dr. Coutre, or 1 pm, which is when I Love Lucy starts. It turned out the Kitchen won the race but with one hitch. I was actually surprised they brought in everything I ordered, including 3 write-in things without a hitch, but the cheeseburger they sent also had lettuce and tomato on it which I cannot eat. So we told the nurse and she sent for a new one. Then the visitors came in second and Lucy in third. In the end, Dr. Coutre DNF (did not finish) the race. He actually never saw me himself and the smaller doctors discharged me. They are still not really sure why all this happened but I think it was just a combination of a lot of things making me really tired and also having a low red blood cell count. After I got home, I ate dinner and then afterwards Lauren Chu and Chris Chen stopped by and we played Super Monkey Ball 2 and Donkey Konga, good times. They had to leave at 10 and I took the chance to take a shower. Austin swung by after my shower and he blew up the death star and did part of the Hoth mission in rogue squadron. He left at 11 to give me a chance to get a good night's rest. Today, my appointment was at 11 and it was a slow, normal day. I got platelets and then after the platelets were done, I developed two hives, one on my chest and one on my leg. So I had to get more Benadryl so I was really sleepy on the way home, but it gave me a chance to take a nap. As usual, please leave comments for any questions you may have. Also as usual, photos are available here. (10 Comments |Comment on this)
Monday, March 20th, 2006
8:29 pm	So Friday night after I got home from clinic Jing and Allen and Ronald came over and we rented walk the line and watched it. Later Chen and Sonya also came to watch. Unfortunately, Jing and Allen had to leave early at 5 in the middle of the movie to eat dinner with their families and even worse I forgot to take a picture with them! Anyway, I thought walk the line was really good and it was kind of weird to watch because Johnny cash's brother is named jack and my older brother is also named jack and I am Jon. haha. Anyway everyone came and left at different times and Ronald and I were the only ones who actually watched the whole thing. I liked the history of the movie, how powerful rock and roll was and how the culture was changing. It also sounded really good. Saturday after I got back from clinic, Bryant Chen came completely out of the blue to visit me and he gave me two swords and a watermelon to cut up haha that crazy bastard. Then a little later, Steve Yi, Josh Fredkins, Jason Kaye, and Johnny Huizay came by for some madden and watch March madness. They had pizza and left a little bit after dinner. I can't have outside food so I ate with the rest of my family. Senorita Czerkawska stopped by Saturday night too. She gave me boggle, an angel bell, and some candy. It was really nice to see all of them again. That night we also ate half of the watermelon. Sunday after I got back from clinic we played around with the watermelon, the swords, and a BB gun haha. Eric and Amy Chao, the Chaos also came by to visit me and they played around with the gun and sword too. They left after that to go study and what not. That night, Ronald and Chen wanted to do some cooking with me and eat so we made lasagna. Ellen, a family friend who is the same age as Jack also came by to visit and she helped cook and ate dinner with us as well. Sonya also stopped by but she came after we had already cooked the lasagna. While we were waiting for the lasagna to finish baking, we all had a Sudoku race and Sonya was the winner. Also, A Lean came by for a few minutes to say because she and her boyfriend were going out to dinner I believe. After dinner, we all chatted for quite a bit and then everyone went home except Ronald and we watched an episode of 24 season 4 and then Ronald went home and I went to sleep. Monday, today was quite an adventure in the clinic. The appointment was at 11:30 so we left around 11 and when we got there, I got platelets and then I had to go downstairs to get an EKG which is a heart test where they put 12 stickers all over your body and wires attached to the stickers measure the electricity in your body. It only takes a few minutes. Since if I walk, my heart rate goes crazy fast, I went in a wheel chair that I tried to push myself for the most part but my mom kept wanting to push it for me and she had to lug around a rolling backpack full of all our stuff, she didn't push me very balanced so even when she pushed me, I had to help out. It was raining, so we went through the little known underground tunnel that connects the clinic to the rest of the hospital which is where the EKG would be done. We left after the platelets were done at 2 and got to the Echo lab where the EKG is done at around 2:30. Then we rushed back to the downstairs of the clinic to see the Doctor Coutre for the final checkup before we begin the clinical trial on Wednesday. Doctor Coutre was running late as usual so we did the bone marrow biopsy before Doctor Coutre came. When we were waiting for them to come, there was a fire drill and the freaking alarm kept on going off for almost 15 minutes. Freaking annoying as hell. They have these fire drills in the hospital like every few days but usually in the cancer unit, f ground, it only lasts like 2 or 3 minutes. Dr. Greenwald, a really nice guy did it and he is really good at bone marrow biopsies. It was relatively painless and he chatted with me as he did it so I wouldn't be focused on the discomfort. He got some good samples and it went relatively quick. After that was done, Dr. Coutre came and he examined me and made sure everything was okay which it was. After that we went home and it was almost about time for dinner but before that, Kathy gave me a manicure ahahhahah. After dinner with the family and Kathy, Ronald came over to watch 24 which had an unbelievable ending this week! As far as how things are going, we are all green light and ready to begin the clinical trial on Wednesday, when I will be in the research lab center all day for 8 hours at least because they are going to do hella lab tests and stuff to see how my body absorbs the trial and whatnot. Tomorrow I am going into the clinic at 9 and will probably get platelets again so if things go well I'll be home at around 1 or 2. Lots of photos uploaded on flickr which is at here. (7 Comments |Comment on this)
Friday, March 17th, 2006
8:50 pm	transition So I made a Live Journal because I thought it would be better because then anyone can make a comment! Since my last post on xanga, not much has changed except that the clinical trial won't begin until wednesday actually because the pharmaceutical company wants to come into stanford on monday and do a dry run to make sure Stanford is doing all the lab work and studies correctly the way the pharmaceutical company wants to be run. Wednesday also happens to be the earliest time there is a bed available for me because I will be in the hospital all day and constantly tested to see how I react to the drug and how fast my body absorbs it, etc. This is fine because as of right now, I feel great, completely normal, just a little tired. The only other thing is I have not been producing platelets and have been needing transfusions every other day for over 2 weeks and the for the past 3 days, every day I have gotten an infusion of platelets. One other worry is if the white blood cell count suddenly jumps up and the cancer cells start to multiply very fast. However so far my white blood cell count has remained around the same level so waiting until wednesday is fine. (It has been around 30.0 the past week after jumping up from 12. A normal white blood cell count is 4-11). I don't have much else to say except that two nights ago I cried openly. I only remember crying openly a few times in my life and they are as follows: -when my mom would leave for work and she wouldn't be around when I was really little -the first time I tried to ask a girl to a formal/prom and then she said no... but that was my fault -when I found out I would be in the hospital and not able to attend graduation -a few nights ago when it truly hit me what happened on 24 Monday for all those confused or curious my xanga can be found here. (9 Comments |Comment on this)